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Active Surveillance-How Long?

User
Posted 23 Feb 2023 at 17:48

Hi All, had a telephone conversation today with the Consultant regarding the result of my MRI scan undertaken on the 8th February'23. No significant change ,but an increase in size again, which hopefully explains the urinary symptoms experienced. I've agreed to another biopsy, although did get offered further treatment. Let's see the outcome of the biopsy first.

Have a great evening everyone!

User
Posted 12 May 2023 at 11:23

Hi All, Had my Transperineal Biopsy on the 16th March and had to chase the results up. Got a call to say the biopsy showed no malignancy. MDT recommend AS. I had a Nurse telephone appointment yesterday, 11.05.23,  with the results of a PSA taken on 5.05.23, which read 7.2 . Seems like it's bouncing around a bit, which maybe suggests Prostatitis. Will remain graded at Gleason 6.

All the best!

User
Posted 13 May 2023 at 14:33

Good result Paulo,

I was going back over this thread and noticed a reference to Facebook and Keith who was a friend of Bollinge. Bollinge was a regular poster on here but we have not heard from him for quite a time now and I wondered through your connection whether you know or could establish how he is doing?

Edited by member 13 May 2023 at 14:37  | Reason: Not specified

Barry
User
Posted 13 May 2023 at 14:43

Keith pops up on Facebook occasionally. Likewise, not heard from Bollinge for a while. I hope he's well.

User
Posted 13 May 2023 at 15:50
I have tried to message Bollinge but his in box is full
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 May 2023 at 19:28
I've messaged Keith, will post if I get a response.
User
Posted 14 Jun 2023 at 06:04

Hello,

I've been on active surveillance since July 2022. gleeson was 3.3

PSA full list on profile

 

April 2023 was 1.1

MRI  next month, I'm worried if the cancer has spread since last July MRI scan.

PSA can't tell you if it spreads.

 

User
Posted 14 Jun 2023 at 10:42

Hi Dave,

What did the July MRI indicate and was this your 2nd one? If there's been any significant change, they'll call you in for another biopsy, but your PSA results in your bio would suggest nothing much has changed, which is a positive. 

Even though they've recommended AS, if you're struggling mentally, surgery is usually offered as an option. I for one aren't ready for the risks associated with surgery at the stage I'm at.

See you're from West Yorkshire. I live in Pontefract.

All the best!

User
Posted 14 Jun 2023 at 11:30
Thanks for replying last July was my first MRI , it showed 1% low level cancer in one part of the prostate, like, I had biopsies taken just after the scan, the urologist asked if I had thought about surgery and I said brachertherapy seams ok, but my urologist said due to it being low level , we will put you on Active survailance.

the risks ect.

I seam to be coping with mental health.

I live not far I'm in Wakefield.

All the best.

User
Posted 14 Jun 2023 at 11:43

I've been on AS coming up 4 years in August. I had an MRI after One year, so you should be booked in soon for one. After that, it was just regular PSA tests, until a gradual increase in PSA , it was recommended another MRI and then biopsy, which showed patches of Chronic inflammation(Prostatitis).

Keep us up to date with your journey. This online community is excellent and there's a lot more knowledgeable people than me, that offer sound information and advice.

User
Posted 14 Jun 2023 at 13:30
Just rang my urologist team, last July mri showed no cancer, but it was the biopsies that found it, so what point of mri scan. unless the mri scan shows it at a larger scale.

User
Posted 14 Jun 2023 at 13:42

Appreciate its not easy but try not to overthink it. AS wouldn't be recommended if it wasn't a sensible course at this stage. Seems like they have caught it very early so you have some time to think. I was on AS for I think nearly 3 years and they did a good job of monitoring things on AS

User
Posted 14 Jun 2023 at 16:43

Originally Posted by: Online Community Member

PSA can't tell you if it spreads.

 

With a G3+3 adenocarcinoma, PSA would show any spread or change very quickly. It would only be if you were diagnosed with a rare type like small cell carcinoma that PSA would remain low

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2023 at 20:25

Hi all,

PSA result from a test on 11th Sept'23 was 8.5 from 7.2. in May. Still bouncing about a bit and nurse thinks it's probably a combination of prostatitis and enlargement. I've already had a 12 week course of antibiotics recently and was surprised when she informed me they have patients who are on antibiotics continuously. Another test in 8 weeks and was offered an appointment with the hospital Doctor regarding Prostatitis. I'm going to see how i get on up to the next test.

All the best, Paulo

User
Posted 22 Nov 2023 at 16:31

Got my PSA results yesterday from bloods taken on 14th Nov'23 , it's dropped slightly to 8.1 from 8.5.

I've taken up the offer of a chat with the Urology Doc and a flow test tomorrow at Pontefract Hospital. 

Have a great evening everyone!

User
Posted 22 Nov 2023 at 19:32

Originally Posted by: Online Community Member
I think there are three groups suitable for AS -

- those of advancing age who are likely to die of something else first
- unusually young men who need to buy some time to complete their family, freeze sperm or just live a ‘normal’ life for a little longer
- men with other health conditions that need to be resolved or stabilised first.

In all cases, the Gleason needs to be of the lowest grades, the PSA needs to be stable, the tumour needs to be well within the gland and not encroaching towards the edge or centre, and the AS must be delivered in line with NICE guidance ... regular PSA, at least annual DRE and annual MRI. My father-in-law chose AS at the age of 79 but unfortunately it wasn’t done properly, he was repeatedly refused a new scan even when his PSA acted weirdly and ultimately, he died very suddenly of undiagnosed mets to soft organs.

I was diagnosed at 64. I had a family history of the disease my father and younger brother both had it. My PSA was 5.6

Three years ago, my first MRI scan showed a small tumour on the right lobe, T2a. A subsequent biopsy showed only 2 out of 15 were positive. One in the targeted right lobe,  which was only 5% cancerous, but did reveal a second foci on the left lobe which was 10% cancerous. Gleason 6 (3+3) . I was told that many consultants would deem this as benign.

At my first MDT meeting my disease was staged as T2a, low risk and the advised treatment plan was AS. I did as I was advised.

I have since discovered, although the histology, showed low grade, low volume disease, as it had been found in both lobes; it should have been upgraded to T2c, and classed as intermediate or, in view of my history, high risk disease. Which according to NICE guidelines should have been deemed unsuitable for AS

I also discovered that as a result of my first consultation, I should have been booked a follow up MRI in June 2021. This was never done.

My monitoring of the disease was limited to 3 monthly PSA checks which remained relatively stable.

Eventually they realised my 6 month follow up MRI scan was 14 months late.

It showed the bilateral disease had progressed and  breached the capsule.  A second biopsy showed that 20 out of 24 cores were positive. Gleason (4+4) T3a

I have complained regarding the cancer staging error and failing to book and conduct a follow up MRI for June 2021. They have tried to fob me off with various contradictory excuses. I have now complained to the Health Ombudsman.

My research, legally and medically, suggest NICE guidelines are just that, purely guidelines which are too open to interpretation.  

Although I wasn't informed at the time, I have since been informed that PSA tests are only an indicator and that many on AS will encounter disease progression. I advise those on AS, not to solely rely on PSA results, ensure you have follow up examinations and scans. 

Adrian

Edited by member 22 Nov 2023 at 19:38  | Reason: Not specified

User
Posted 22 Nov 2023 at 19:50

Adrianus,

So sorry to hear this catalogue of errors, for which you have paid a high price.

Take care of yourself.

JedSee.

User
Posted 23 Nov 2023 at 09:42

That's bad Adrian

I have also been told low risk T2, with 11 from 20 cores positive, tumours in both sides, and a family history. Doesn't inspire confidence. I will be watching my PSA result from my test in December very closely! 

User
Posted 23 Nov 2023 at 11:26

Originally Posted by: Online Community Member

That's bad Adrian

I have also been told low risk T2, with 11 from 20 cores positive, tumours in both sides, and a family history. Doesn't inspire confidence. I will be watching my PSA result from my test in December very closely! 

Hi,

Thank you and JedSee for your comments. 

The last thing I want to do is make anyone who's selected AS to doubt their decision.

Although my father had prostate cancer he lived until he was 88 years and my younger brother was 60 years when he was diagnosed with T2a, Gleason (3+4) for which he had radiology.

I think a lot of the errors made in my diagnosis and delays, were down to COVID disruptions, but in my opinion there is no excuse for some of the malpractice.

On the initial information I was given, low volume low grade Gleason 6 (3+3), some "consultants call it benign" T2a staging. I believe my decision to opt for AS was a no brainer. The MDT had advised that treatment and I thought I couldn't go wrong following professional advice.

I was assured that if the disease progressed it would be so slow and that PSA checks would show any developments. I did some research on reputable sites, that showed  far to many men were opting for radical treatments when AS was an adequate treatment and I didn't have a problem with living with cancer. I was happy with my decision.

During AS, communications and correspondence were poor. Telephonic consultations (COVID prevented face to face meetings) were summarised in letters to my GP but I rarely received copies of them.

As I said during the next 20 months my PSA levels remained relatively stable.

It was only when purely by chance that whilst telephoning for my latest PSA results, I was put through to the consultant who had initially diagnosed me and who had recommended the follow up MRI scan in June 2021. He then realised that this was now over a year over due.

2 months later I had that MRI scan which showed both tumours had grown T3a.

I was the given another biopsy. TP under general anaesthetic which revealed extensive disease.

These results shook me! I got copies of all my medical records and discovered that, in my opinion, errors had been made.

I was booked RARP for November 2022. I was just leaving home to go for the op when the hospital telephoned me cancelling the op, due to lack of beds. I was rescheduled for the op in Dec 2022. I was all gowned up and ready to go when the anaesthetist had concerns and the op was cancelled. These delays were almost unbearable. After the second postponement, my wife and I were shattered.

I eventually got the op in Feb this year. 

I lodged an official complaint, which was a long winded process.  I eventually got a reply. It was farcical. I complained two more times, as their responses contained serious inaccuracies and contradictions. They couldn't even work out that my follow up MRI had been 14 months over due, they said it was only a 2 month delay. They said that a 2 month delay would have caused very little difference to discovering disease progression. When they finally admitted their miscalculation, they didn't comment on how much a 14 month delay may have made.

That's when I complained to the Parliamentary Service and Health Ombudsman. Only to be told that due to a back log caused by COVID, there would be a five month delay before they could investigate my grievances. So I should hear something in Spring next year. 

Anyway, I apologise for digressing and momentarily hijacking this conversation.

Unsurprising, I've lost a bit of faith in the NHS. Having said that. Recently I have taken time to write to two CEOs of Trusts complimenting and thanking their staff for excellent treatment I'd received for other health issues.

Whist researching AS, I found this https://gmcancer.org.uk/wp-content/uploads/2021/10/paper-3_gm-active-surveillance-protcol-v7.pdf which is quite interesting. It seems some Trusts  have their own additional guidelines in managing and monitoring prostate cancer whilst others just use NICE and BAUS guidelines.

 

Adrian.

Edited by member 23 Nov 2023 at 14:31  | Reason: Additional text.

User
Posted 23 Nov 2023 at 22:29

Originally Posted by: Online Community Member

That's bad Adrian

I have also been told low risk T2, with 11 from 20 cores positive, tumours in both sides, and a family history. Doesn't inspire confidence. I will be watching my PSA result from my test in December very closely! 

I would be concerned if you were my dad or partner - 11/20 doesn't sound like a low burden disease even if you are G6(3+3) - have you considered a second opinion with a different urologist?

Family history isn't so significant unless the family history is of direct male relatives diagnosed with PCa in their 40s / early 50s, direct male / female relatives diagnosed at a young age with breast cancer and / or female relatives with endometrial / uterine cancers. Most men get prostate cancer if they live long enough. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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